Research project: "Growing Older, Planning Ahead"

Richard Keagan-Bull (L’Arche London) is a member of a research team at Kingston University, led by Professor Irene Tuffrey-Wijne. Between 2020-2023, they conducted a study called Growing Older, Planning Ahead, about adults with learning disabilities over the age of 40, who are seeking to move away from their families. They wanted to understand what information and support was available for families and what resources they needed to help them plan ahead.  

“It's not something I can think about. I’m hoping to go on and on, and continue my caring role, because I can’t see no way out of it.” Margaret, family carer.* 

What was your role in the project? 

The project involved a mix of one-to-one interviews and focus groups, where we met people with learning disabilities and their families together. As someone who has a learning disability, I was an expert by experience. We also went to meet with partnership boards, and to day centres where we met people with learning disabilities who were still living with their parents. 

What is the problem the project was trying to address? 

The project was for people with learning disabilities still living with their Mum and Dad. To help them communicate what they want for their future. It was also trying to help parents looking for places where their children could live if they decide to move away from home. It was also to help people understand how the [social care] system works, what social workers do and the different care models available. 

Some people trusted the system, others were scared of it, particularly the unknown. We are all scared of the unknown. 

What did parents say they were worried about? 

They were concerned about the control social services have, and that social services would be trying to do things on the cheap. They worried about how their child would be able to move and settle into a new place. And about who funds what. 

One person had behaviour some people could find challenging and would need a lot of one-to-one support. He had even been arrested by the police because of his behaviour. His Dad worried it would be hard to place him somewhere and didn’t want to let him go.  

What concerned people with learning disabilities about moving away from their families? 

Some worried about having to make new friends and having to live with people they didn’t like. With L’Arche, there’s a chance to make your own friends with people of a similar age to you, to be treated like an equal, not treated as a client. But a lot of people with learning disabilities – their friends are their Mum and Dad’s friends.  

There were also concerns about what support you get if you have a crisis, and then ending up in psychiatric hospital.  

One person had heard of someone in a supported living house, who had to go to bed at 9.30 in the evening and was not allowed to stay up late and go out.  

At the end of the project, how optimistic did you feel for adults with learning disabilities looking to live more independently from their families? 

Sometimes, social workers don’t make the best decisions about what people need. They’re often looking to save money. And they maybe only see a person once, or once a year. So before meeting a social worker, you have to be really clear about what you want and need.  

That’s why as part of the project we made some planning ahead cards to help families, and social workers. They’re a set of cards designed to help you look at the kind of place you’d like to live, what you enjoy doing in your life, who you want to live with. The cards have pictures and words on them. The idea is that you’d sit down with someone and look at the cards together, and they build up a picture of what the person wants.  

So I feel more optimistic, thanks to the work done by our project. 

 Useful Resources

Richard Keagan-Bull

A researcher with a learning disability, employed by Kingston University and hosts his own podcast, A Cuppa Tea with Richard. A long-term member of L'Arche London. 

*The quote is from p.56 of the report: Growing Older Report.pdf - Google Drive 

This interview was written by Richard Keagan-Bull with support from Chris Asprey, L'Arche UK Communications.